I am often asked how I am doing and I usually give a brave answer like, “making the best of it!” And even though most days include lots of laughing and enjoyment, everyday I wake up wishing Eden’s heart condition has gone away. I usually dream as though Eden is a typical healthy kid and am reminded of the truth in the morning. I lie there and go through all the wonderful things about her life and little body for which I am SO grateful - her big blue eyes, her astounding intelligence, her wild spirit, her never-ending love. Sometimes repeating these attributes, mantra style, is what gets me through the day. Eyes, wise, spirit, love. Eyes, wise, spirit, love.
I recently read an article about a man suffering from an extremely rare and severe disease. He elaborates on the metaphor of an “orphan” malady and the all too real feeling of being abandoned by a failing medical system, falling through the cracks, and even envying people with “families”, otherwise known as common diseases, such as a real orphan might do.
I found myself relating to this man’s lonely situation. Not because Eden’s condition is as rare nor has she been ignored by the medical system, but because I feel lost among mothers… in a child driven age where play dates are the norm and entire industries are focused on the latest toy or designer clothing. I envy mothers of healthy children, their ease, relief, and security; I even envy their daily challenges and fears. I know few, if any, mother’s fighting my same battle. I am an orphan. Drawn towards the mother of an autistic child or one with Downs Syndrome, it takes all I have not to run up to those women and say, “I am one of you!” No life is guaranteed, I know, but oh, to worry about Eden eating too much candy, growing out of new clothes, or at which school she should be enrolled sounds like such a luxury.
I realize that it is not widely accepted to publicly feel sorry for yourself. But the truth is some days I wish our situation were different… I wish it was easier and I wish Eden’s future were more secured. Mostly, I wish I could wake up tomorrow morning and fret over which preschool Eden should go to rather than if she will live to go.
Eyes, wise, spirit, love. Eyes, wise, spirit love.
I recently read an article about a man suffering from an extremely rare and severe disease. He elaborates on the metaphor of an “orphan” malady and the all too real feeling of being abandoned by a failing medical system, falling through the cracks, and even envying people with “families”, otherwise known as common diseases, such as a real orphan might do.
I found myself relating to this man’s lonely situation. Not because Eden’s condition is as rare nor has she been ignored by the medical system, but because I feel lost among mothers… in a child driven age where play dates are the norm and entire industries are focused on the latest toy or designer clothing. I envy mothers of healthy children, their ease, relief, and security; I even envy their daily challenges and fears. I know few, if any, mother’s fighting my same battle. I am an orphan. Drawn towards the mother of an autistic child or one with Downs Syndrome, it takes all I have not to run up to those women and say, “I am one of you!” No life is guaranteed, I know, but oh, to worry about Eden eating too much candy, growing out of new clothes, or at which school she should be enrolled sounds like such a luxury.
I realize that it is not widely accepted to publicly feel sorry for yourself. But the truth is some days I wish our situation were different… I wish it was easier and I wish Eden’s future were more secured. Mostly, I wish I could wake up tomorrow morning and fret over which preschool Eden should go to rather than if she will live to go.
Eyes, wise, spirit, love. Eyes, wise, spirit love.
“The I in illness is isolation, and the crucial letters in wellness are we.”
~Author unknown
2 comments:
Hey Eden it's your Nic (the nanny). I am always thinking and praying for you and your family. I know you are a strong mini muffin so show us all you can get through this. I love you...How much?...So much!!!
Nicole Cito
Eden we are so happy for you! We are thinking of you and your family sending positive thoughts and prayers your way!
Love,
Nanny Nic's Aunt Kristy & Baby Degers
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